Profound autism

This is an interesting take. 

Profound autism, is it real, or is it just intellectual disability with certain autistic features? People with intellectual disability, who are also talkative and extrovert and keen on social interaction are not called 'profoundly neurotypical'.

This sort of thing, like assignment of species in human evolution, tends to switch between 'lumpers' and 'splitters'. The 'spectrum' saw lumpers in the ascendant, perhaps the pendulum is swinging the other way?

I'm wrong actually: just re-read the report I was thinking of and it didn't specify type/level at all.

Maybe that's a solution to the issue of how impacted and individual is within the spectrum though, rather than making new terminology?

Fwiw I think of level one as what would have been called Asbergers, two as moderate and there as profound. 

That was a good explaination. 

I did find this quote interesting
"However, these levels aren’t fixed categories. They are based on a snapshot in time – a reflection of current support needs, which can change depending on age, environment, stress levels, and access to help."

And I think I saw on some more american sites, people were saying things like they were level 1 this and level 2 that, like it was split down further? I think it might just be a way of describing a spikey profile and communicating it to others?

I don't know where I sit with this. I don't like when those thought to have "level 1" or "high functioning" autism are considered mild. It takes away from our difficulties and suggests we don't need support when we really do.

However, I'm very aware there are individuals with autism who require a significant level of full time support. They deserve the support and understanding they need. 

I do worry where this categorising would end if we start splitting the spectrum up more than it already is being though. I also worry that going in this direction will even further reduce the support for those of us that are deemed to function and it's already almost non existent.

The spectrum is complex. I'm not sure what the answer is.

Cinnabar_wing said:

I thought the Uk doesn't recognise levels, places like the US use them

That was my understanding too.

There is an explanation here

www.oxfordcbt.co.uk/.../

I thought the Uk doesn't recognise levels, places like the US use them. I would suppose sometimes an assessor  might give one maybe, but it's not a recognised thing here. 

My form didn't specify either, but I wouldn't be surprised if there were some places that do. Also it's related to DSM rather than ICD which doesn't have levels? (So it would depend which the assesor used and if they decided to use the levels? Just a guess really)

I suspect it depends on who is doing the diagnosis (and perhaps when?)- I'm in England too and have seen it used recently on a report. 

Acquiesce said:

I suppose there's already the levels distinction within autism

I live in Engand and levels weren't used in my diagnosis.

Autism Spectrum Disorder is my diagnosis. 

I don't know where the levels are still used.

I suppose there's already the levels distinction within autism - perhaps that will just become more widely used? To my knowledge, profound is basically level 3?

I think the distinction is quite important.

Sometimes people talk about autism in very positive terms and that concerns me with regard to this particular group of people for whom some of the things that are said are I believe inappropriate.

Interesting - I'd assumed we were heading towards a more overarching ND type catch all diagnosis given the overlaps between conditions and likelihood that there's more than one condition at play. 

I do think the 'profound' definition is helpful, though waiting until 8 for that to be formalised seems like a nightmare when it comes to the already incredibly difficult to access special school places - we are heading towards a time where we are all 'special' schools, despite there being an ever increasing demand for specialist provision, often with places filled by children a long way off any profound definition as they have parents who knows the system and are able to advocate. 

I think it's interesting, though does feel a little bit of musical diagnosis -they rolled up all 'milder' conditions like aspergers into one ASD, then they say there should be a difference between them and profound (albeit where the line drawn is different I think).

I do think there is a difference with those who are proundly affected, don't get me wrong there, but the article highlighted many problems with the proposed criteria (having to double-assess kids who get an autism assessment before 8, but have to wait to be assessed as profound). It does highlight what a complex problem it is to define, and how to get help to those that need it most -as caring for a profoundly autistic child must be a lot more work.